Tomorrow will be six weeks with Robbie in the hospital. For over 40 days, we have experienced fleeting peace when Robbie is able to sleep. Every day these past several weeks, the familiar sign that he was waking up was a long stretched-out moan of pain and discomfort. Though I have desired for him to be wakeful, every time I would sit by the bedside as he slept, I admit I dreaded having him wake up because it meant seeing him in yet more pain.
I share all that in order to tell you how amazingly sweet this morning was. He had a fairly good night of sleep for Tanja’s parents and was asleep when we arrived. Tanja had stepped out and I was beside my sleeping boy. One of the med techs walked in to take his blood pressure. I got the cuff off of the side of the bed and lifted his leg. When I looked at Robbie, he opened his eyes and had a big smile on his face. He wrote “I W-A-S F-A-K-I-N-G” (He was just pretending to be asleep). As I write this, I can still picture that beautiful smile.
Thankfully, he followed that smile up with a fairly good day. We have had two days in a row where one of his two physical therapies is in the pool, which he has enjoyed and usually has an easier time relaxing a bit afterwards (see attached picture). Our therapists here have been great and Robbie is really blessed with their patience, steadfastness and understanding of his needs. The Child Life associate on our floor blessed us today as well by arranging a trip with Robbie up to the helipad to have a private up-close showing by one of the pilots of the “Angel One” helicopter.
My boy cannot speak, eat, stand, or walk. He has trouble sitting up without falling to one side of his bed or the other. He cannot grab hold of things with his hands and struggles to move much at all. He continues to be in pain most of his waking hours. And yet, in the midst of all this, God is able to bless us with a pretty good day. A few nights ago, he spelled out “W-H-Y M-E-?”. That is a question that I doubt we’ll ever be able to answer this side of Jesus’ victorious return. I do know this with regards to what is happening now - what the enemy intends for evil, God WILL turn to good.
Thank you for your prayers. PLEASE PRAY THAT HIS THIGH MUSCLES WILL RELAX. They just continue to plague him with pain even on his “good days”.
Grace and peace,